An opinion piece by Anja Christoffersen
I was born into a life with an ‘invisible’ disability that I thought I could “grow out of”. At 28 weeks of my mother’s pregnancy, I was diagnosed with VACTERL association, an acronym describing vertebral, anal, cardiac, tracheal, oesophageal, renal and limb defects. My parents were told their baby may not survive the first few days, let alone the long road of surgeries and challenges ahead. Some of the malformations meant I had no way to get food or water in or out of my body – my food pipe was connected into my air pipe, not my stomach, and I had one pelvic opening (cloaca) instead of three.
At five hours old they whisked me into surgery to keep me alive, reconstructed my food and air pipes, and made a colostomy (bowel) and vesicostomy (bladder) so I could get waste out of my body. At seven months old I had a full pelvic reconstruction before having my ostomy closures a few months later. Since then, I’ve managed lifelong bowel incontinence. No medical professional could predict what my life with this rare condition would be like.
The first five years of my life were a blur of surgeries, hospital admissions and doctors’ consultations. I had some healthy years after this, where I felt as if my medical issues were things that I had managed to overcome - that my disability was something I had outgrown.
Now, in my twenties, I am faced with a different reality. I have had more surgeries and procedures under anaesthetic than I can count (estimating 35!) and about 150 hospital admissions/ED presentations. I have had my education, work and career held at the mercy of my health. I have navigated life with a sense of isolation – recognising that I do not fit into a world that does not cater for, or seem to understand, sporadic illness and invisible disabilities. Seeing up to 12 specialist teams at any given time, sick leave in traditional employment wouldn’t even cover appointments, let alone when I am actually unwell.
I took a different route with my career – to try and represent scars, disability and diversity in fashion. And that is where I met my current business partner, Mary Hecker. After a year of knockbacks, with no agency interested once they found out about my scars, I stumbled upon an agency where Mary was a manager. Working incredibly hard after being given my first chance, I landed work interstate and internationally, with highlights being walking Mercedes Benz Fashion Week Amsterdam at 17 years old and placing 1st Runner Up at Miss Grand Australia, Australia’s third largest beauty pageant, in 2019.
From there I wanted to be heard rather than just seen and ventured into the space of disability advocacy – speaking at conferences internationally, publishing my book Behind the Smile: An Inspirational Journey from Disability to Ability. I also worked with hospitals and not-for-profits and mentored others with disabilities. I learnt that my story with disability could resonate with people globally and have a positive impact on their lives. This brought great meaning, a sense of self, purpose and community, and my impact was acknowledged through receiving the QLD Young Achiever Leadership Award for 2020.
I realised my lived experience of chronic illness and disability had value that could not be taught or bought, but was able to improve the health outcomes and patient experience of millions of people accessing health services. And it was important for this value to be acknowledged financially, and for there to be improved pathways for others with disability to pursue using their lived experience as a profession.
That’s where Champion Health Agency comes in. Co-founded with Mary in May from a talent agency concept, we are providing a personalised management service for other people with chronic illness and disability - and carers - to connect them with opportunities to improve lives and the health system. We connect the people we represent with opportunities based on their goals and key issues they have identified through their experiences, to make meaningful change and have flexible income opportunities.
We acknowledge that the NDIS is great for improving social and economic participation for the 1 in 11 people with disability who have access to it. However, what exists to support social and economic participation for the other 10? Champion is a platform for people with disability to speak and be heard by the health and medical professionals who, historically, have consulted with other people on decisions that affect our lives.
We are the one-stop-shop for any stakeholder who interacts with people with chronic illness and disability, and wants to make the world a friendlier, more respectful and accessible place for us.
If you want to support us, head on over to our new website for more information and check us out on socials. If you would like to be represented or are a stakeholder wanting to work with me or someone we represent, please send me an email anja@championhealthagency.com.
Anja Christoffersen is the co-founder and Executive Director of Champion Health Agency, amongst an abundance of other roles including author, speaker, disability advocate and fashion model.
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